Monday, February 15, 2010

Perhaps no one is able to give greater insight into living with congenital CMV than the parents of those children and adults born with this disease...

Every year in the United States alone, thousands more children are born with congenital CMV. Their parents experience an unspeakable fear and pain as they learn more about this disease and its effects and as they piece together what life will look like for their children and their families.

Tuesday, February 2, 2010

Imagine giving birth to a baby and finding that your baby was exposed to a dangerous virus during pregnancy. This virus, Cytomegalovirus (CMV), could have a questionable impact on your child’s development and prognosis and you have no outlook as to what your child’s life and medical situation would be. You were never informed of this virus by your OB/GYN while pregnant and were never told to take any precautionary measures to prevent exposure. You blame yourself for allowing harm to come to your unborn child and you wonder how and where you may have acquired the virus and what you could have done to prevent it. Upon learning that you likely acquired the virus from small children, even possibly your own small children, you blame yourself for not being more careful but you also slightly resent your other children for indirectly harming your newborn.

When you research the internet and search for information about CMV, words like "herpes" and "HIV" come up in many of your searches and you feel additional shame and guilt wondering what you did to harm your baby. When you read about CMV, you read in pregnancy and parenting forums that it is "rare" and "uncommon", coupled side by side with data from medical sites, putting statistics closer to 1 in 150.

As you inform friends and family members about your baby’s diagnosis of congenital CMV, they ask questions about how you got it and what may happen to your baby. When you express your concern and don’t have all the answers for them, they search on the internet and find information that is equally confusing and can be taken out of context. The same words, "herpes" and "HIV", are thrown back in your face. You are asked if CMV is an STD and if you were promiscuous during your pregnancy. Your spouse may question your fidelity before and during your pregnancy. Your family, friends and community may ostracize you thinking that your child has HIV or an STD.

They may also read about CMV contagion issues and assume that CMV is dangerous to everyone and that your child could infect healthy people and cause them to experience disability or death. They may also read that CMV exposure during pregnancy is dangerous and may unfairly shun your child and family out of fear that their own pregnancy may be compromised and endangered by exposure to your child. They may not realize that you, very likely, caught CMV from a healthy child while you were pregnant and that healthy children whose CMV status is unknown and statistically high pose the greatest risk to pregnant women.

You may see a decline in contact from your friends and family. Upon learning of your baby’s diagnosis, family and friends who expressed eagerness to visit and meet your baby may cancel their visits, not call at all or never speak to you again. Those who previously arranged to help you with household chores and with your other children may also change their mind and decide to opt out for concern of their own health and safety.

You may be disinvited from playgroups out of fear for the other children. There may be an assumption that your child could infect and disable otherwise healthy children in the group. You may not be able to find a daycare or preschool that will accept your child. You may have to field questions from babysitters or caregivers about your child’s diagnosis and about the perceived impact that your child’s presence may have on the caregiver, the other children and on their business.

You may choose to stop telling people about your child’s diagnosis out of fear or shame. When meeting with social workers and other professionals, you may try to hide your child’s true diagnosis and instead use a secondary diagnosis, such as cerebral palsy or hearing loss, to qualify for services. When your social workers or other professionals hear about your child’s real diagnosis, they may ask to be removed from your child’s case out of fear for their own health and safety. You may have difficulty obtaining a new staff member as word spreads about your child’s diagnosis within the agency. When your child begins preschool or elementary school, there may be some concern expressed about your child’s diagnosis. You may have difficulty in explaining to the teachers and staff that your child poses no threat to anyone in the classroom or on the campus. Your child may have difficulty making friends as other parents find out about your child’s diagnosis and discourage their children to play with yours.

In addition to the grief and other emotions experienced after giving birth to and while parenting a disabled child, you may experience shame, anger, sadness, depression, and loneliness. You may be angry that you were never warned of the dangers of CMV exposure while pregnant and angry that you were not allowed to make informed choices while pregnant to protect your unborn child. You may be angry that you and your child will wear a cloak of suspicion and shame for many years after your child’s birth.

You may be sad that you were deprived of the experience of birthing and raising a healthy child. You may wonder why your child could not have been born with one of the more visible and socially acceptable birth defects such as Down Syndrome, Spina Bifida, or even Autism. These things may cause you to be depressed and may compromise your mental health as well as the bonding with and care of your child in the early days, weeks and months of their life.

You may experience genuine loneliness and isolation and believe that you are one of the "rare" cases of CMV. You may believe that you are the only one in your area, your city, and your state. You may wonder if there are others around you and look at other parents of impaired children in public places and wonder if they also carry your quiet burden and shame. You may wonder where the other parents are hiding and why they didn’t sound their voices louder to warn you and spare you and your child of this anguish.

I write this in tears as an apology to you, the parents of children born with congenital CMV, as a reprimand to others who have hurt you or your child out of misunderstanding and fear and as a loud and clear warning to all. My name is Janelle Greenlee, founder and president of Stop CMV and The CMV Action Network, and this is my real CMV story.

My twin daughters were born affected with congenital CMV in August of 2003 and suffer the severe and irreversible effects of this virus daily as they labor to breathe, eat, and move. Their sweet beautiful souls reside in bodies devastated by crippling spasticity, pulling bone from delicate bone, eliminating all hope of purposeful movement. As they live in a world of silence and simplicity, their minds not capable of understanding their hindered existence, and when they can feel a hint of despair as they watch their peers live rich, active, engaging lives, they have been silenced and can only communicate their sadness through a gentle fuss or cry. And we love them more than anyone can love a child, a compromised child, because we, too, have been compromised–injured and impaired. We fight for their dignity which has been scarred by their unfortunate diagnosis. We fight to give them any semblance of a normal life as we parade them from doctor to doctor, specialist to surgeon, therapist to teacher. We painstakingly work to allow them to more easily live, breathe, eat, sleep, develop, behave, hear, see, communicate, and move.

We did not do anything wrong. We did not sleep around. We did not use drugs. We did not drink alcohol. We did not engage in any particularly unsafe behavior while pregnant. We worked as teachers, daycare employees, nurses, therapists, and mothers. We unknowingly acquired this virus while caring for children, perhaps even yours.

I invite you to take this chance to learn about CMV and share the information with those around you. Pregnant women may not hear about this from their doctor but they can hear about it from us. Not every child may be born free of congenital CMV, but we can take these lessons and give friendship and support to those families, friends and neighbors that may be affected. You can help stop the needless suffering of so many families in your community and around the world by sharing this information about congenital CMV. Congenital CMV shouldn’t have to happen. This confusion, suffering and pain doesn’t need to happen. But awareness, change and progress won’t happen without your help. Please visit www.stopcmv.org to learn more about congenital CMV and how you can help us in our fight to STOP CMV.